Weaning off Ropinerole, -Agony - Restless Legs Syn...

Restless Legs Syndrome

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Weaning off Ropinerole, -Agony

Scottie99 profile image
29 Replies

I have been trying to do the above. I was on 4 mg slow release Ropinerole. I have recently moved on to gabapentine and taking a total of 1500 mg in 300, then 600, then final 600.

Reducing the Ropinerole went fairly well at first but now trying to manage on 2 mg is horrendous.

My legs are jumping almost continually, day or night. I’m almost sorry I started this process.

it’s becoming unbearable.

29 Replies
SueJohnson profile image
SueJohnson

You are probably trying to reduce too fast. The usual recommendation is to reduce by .25 every two weeks or so but you need to let your symptoms settle down before you make the next reduction and you may need to reduce by less or less frequently. Go back up a step to where you last reduced from and let it settle and then take it from there.

SueJohnson profile image
SueJohnson

Yes - looking back at your previous post only 16 days ago you were on 3 mg. It should have taken you at least 8 weeks to get where you are today. SLOW DOWN.

TeddiJ profile image
TeddiJ

Scottie-if I hadn't heard about Kratom powder on this site, I would have never made it. I had to use an opioid to get off the DA's and then kratom to help me from there. I am still using it.

I see you are in the UK. Someone said you can order it as tea in the UK.

I would order some asap-it will save you. Unless you can somehow get an opioid prescribed, this stuff is a lifesaver and works within minutes. The powder is fast acting and the capsules take longer. I have discovered taking both gets me longer rounds of sleep.

Hang in!

Scottie99 profile image
Scottie99 in reply to TeddiJ

I’m in UK. I am under the impression that Kratom is not available here

TeddiJ profile image
TeddiJ in reply to Scottie99

Yes- just saw that and changed my answer. I saw a post where in the UK you can order it from a nearby country as tea. I encourage you to do it asap so you are not suffering like this!

Joolsg profile image
Joolsg in reply to Scottie99

It's illegal but you can buy online from kraatje.eu/contents/en-us/d...

They post to UK quickly and discreetly. It does help. Red vein borneo, half or 1 teaspoon usually helps.

I agree with others - slow down.

Most people find it horrendous and it's difficult to get off Ropinirole without the help of opioids.

Gabapentin won't help while you're still on Ropinirole so slow down, ask for opioids or use kratom or cannabis.

TeddiJ profile image
TeddiJ in reply to Joolsg

Thank you so much for the specific info, Joolsg!

rls-insomniac profile image
rls-insomniac

Scottie, I'm in the UK and have been in your shoes (as many of us have, with success). My GP prescribed gabapentin and also an opioid to help with the withdrawal symptoms. I was prescribed oxycodon (Targinact). Whilst it didn't stop the symptoms, it did help a bit. It's a horrible process getting off ropinirole, but it made a massive difference with my 24hr a day symptoms once I was off the stuff. Sue has given you some good advice. Go slowly. It'll be worth it in the end. Good luck!

Madlegs1 profile image
Madlegs1

Let your body tell you the time scale to come off.

Be kind to yourself.

Listen to the above advices.

Scottie99 profile image
Scottie99

Thanks everyone for the advice. I guess I’m just impatient. My neurologist refused me an opioid. I have ordered some kratom

TeddiJ profile image
TeddiJ in reply to Scottie99

I'm so glad you ordered it, as I hate to hear of your awful suffering. I have been there-we all have!

If you don't know, start with 1/2 to one teaspoon of powder in water or any drink. See what that does within 15 minutes or so, then add more. I wake up and take it throughout the night, though when I add the kratom capsules, it seems i can sleep longer, as they take longer to work.

Hang in-this should help you tremendously. Let me know!

W0nk042 profile image
W0nk042 in reply to TeddiJ

15 minutes from ingestion to effect seems short - for me it’s about 25 to 30 minutes. But that’s not all that important really. What counts is that Kratom is a real lifesaver. it has saved mine as well, and countless others as well. Your GP will most likely advise you against it since it’s not a big pharma medication and hasn’t been tested formally. However, it has been used in southeast asia for centuries and there are no reliable reports of anyone dying from it. All reported deaths have been taking other, more dangerous drugs at the same time.

If you end up taking it longer than a few weeks, prepare for developing some tolerance after the first month or two. I had to go from about 1.5 g to about three after three or four months after beginning to take it. I only needed this one increase of dosage, I was able to take it for three years without increasing it again. I can’t say that about any other medication that I took for my Rls.

One last thing: if you take it without anything else, the effect of kratom wears off after 90 minutes to 2 hours. You can stretch that to four hours if you take it with grapefruit juice. Grapefruit slows down the metabolization of Kratom, enabling it to have a longer lasting effect.

Scottie99 profile image
Scottie99 in reply to W0nk042

Thank you so much

TeddiJ profile image
TeddiJ in reply to W0nk042

Hi, Wonk042. Wow-that is such a great tip! My biggest struggle with it right now is trying to sleep through the night without having to take it so often. I thought the capsules were helping but this sounds much better.

Yes, the powder works on me so quickly. Dr. B says it is precisely because it IS powder and it gets into the system fast. He is not a fan.

Thank you for all of this added info!

W0nk042 profile image
W0nk042 in reply to TeddiJ

Let me know how it works for you! I haven't used capsules because with 2x3,5g per day that would probably be a lot of capsules.

TeddiJ profile image
TeddiJ in reply to W0nk042

I will, thank you. Can't wait to try it-hopefully tonight. Yeah, you might want to try the capsules as extra help, anyway. They are also easy to take with you, if you feel you might need some kratom in the day or evenings.

CrusoeCortez profile image
CrusoeCortez

I'm in the same boat as you. I just managed to get off this horrible shit 2 nights ago. I too have probably decreased the dose too quickly, but I'm definitely not going back on it now. Even tho my RLS is the worst it's ever been. This is sooo horrible.

I'll try and order some kratom. Anything to get some sleep.

TeddiJ profile image
TeddiJ in reply to CrusoeCortez

See my reply to Scottie, above. So glad you are ordering it! Hang in!! This will allow you to sleep! It's not perfect but, yes, anything to end the hell and get some rest.

Let me know, please! Then for round 2 of your fight, you can work on a long-term meds or supplements.

Congrats for getting off of it! Ugh-god, if we all had only known when we started those DA's....

help3 profile image
help3

i finally got off ropinirole completelyneurologist prescribed me 1- .25 pramipexole and 1 - 50 mg tramadol

i feel normal again. been taking for almost 8 weeks

SueJohnson profile image
SueJohnson in reply to help3

I assume you augmented on ropinirole. You will soon also augment on pramipexole as it is also a dopamine agonist.

help3 profile image
help3 in reply to SueJohnson

yes i know, but at least i feel good for now and i will attempt to get pramipexole after couple months. but what i have been reading it seems like no matter what meds you take you will still augmented on med taking to long

SueJohnson profile image
SueJohnson in reply to help3

Only on dopamine agonists like ropinirole and pramipexole. The likelihood of augmenting on gabapentin is close to 1%.

Scottie99 profile image
Scottie99

Again thanks for all the replies. Excuse my naivety , but how do u take kratom powder?

W0nk042 profile image
W0nk042 in reply to Scottie99

Yes, the powder is what you want. It tastes pretty awful, but if you take it with grapefruit juice it’s not all that bad. You can mix it with some juice and let it sit for an hour {(it will take that long to mix because the powder doesn’t dissolve well in water) or you can use the so called toss and wash method. What that means is, that you put some Kratom powder in your mouth, then take a sip of beverage, mix it in your mouth intensely for five seconds and then swallow. You have to be really careful when you have the power in your mouth berore you drink though, because if you get anything into your airway it will make you cough for 20 minutes.

TeddiJ profile image
TeddiJ in reply to Scottie99

I gave you some advice on taking it above, before I had seen this question. I just use water and I do it all super fast at my bedside because I am trying to go back to sleep. I am looking forward to trying the grapefruit juice though!

MattK3 profile image
MattK3

I have no idea why I see constantly huge amounts, way above 1g, of gabapentin mention. A normal dose I think is 2 capsules, which would be about 250mg from where I'm coming from. Anything above that causes huge hangover and acute counter reactions. I have no idea why someone would deliberately take that. It's also not known as a harmless drug anyway. A good amount of studies seems to be concerned with side-effects.

SueJohnson profile image
SueJohnson in reply to MattK3

I guess it is because it works !!! According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." so 2 capsules is not a normal dose. Check it out at Https://mayoclinicproceedings.org/a... Yes for some people it can cause side effects that they can't tolerate but for many it doesn't. I take 1500 mg and it completely controls my symptoms.

Scottie99 profile image
Scottie99

Kratom arrived today (uk) about 11am. About 6pm legs started. I mixed a teaspoon (possibly too much) when grapefruit juice.

Within 30 mins lags settled and have been fine all right.

Great start

LotteM profile image
LotteM in reply to Scottie99

Good to hear. Next time, take half or even quarter teaspoon. If it proves enough for now, you'll have more room to increase later, if needed.

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